Rapid Resolution and Redress scheme – consultation now open

A Rapid Resolution and Redress scheme was one of the key recommendations coming out of the Better Births report. This month the Department of Health has launched a consultation on this proposal.

Currently families whose children have suffered severe injury due to negligent maternity care have to wait an average of 11.5 agonising years to receive compensation. A Rapid Resolution and Redress scheme should offer a shorter, more supportive option for parents.

Birthrights will be responding and will be publishing a guide to the proposals on our website in the next few weeks. If you have direct experience we would particularly urge you to respond to this consultation and use this opportunity to have your voice heard.

The closing date for the consultation is 26th May.

Independent Midwifery: An Update From Birthrights CEO

Following the recent NMC decision on the indemnity cover that IMUK members have taken out, Birthrights has been working to support women who now find themselves without the midwife of their choosing. I wanted to give you an update on what we have been doing to help and to respond to some requests for information.

Letter to the NMC
As you may know, I wrote to the NMC’s Chief Executive, Jackie Smith, as soon as the decision was made public to express my concerns and ask for clarification. I have now received a response from Ms Smith and am asking the NMC to allow me to make that response public. I hope to share it with you in due course.

UPDATE 14/02/17
I now have permission to share Jackie Smith’s response to my letter. You can read it in full here.

Bank Contracts
In the meantime Birthrights posted some information with suggestions about how independent midwives might seek honorary or bank contracts from their local NHS Trusts to enable them to continue to care for indviduals already booked with them. While some Trusts have been able to grant these contracts, others haven’t. I am in the process of writing to Heads of Midwifery who have refused to grant contracts to independent midwives along with the Trust Chief Executives and the MSLC chairs.

In my letters I am making it clear that NHS Trusts (and Head of Midwifery post-holders as Trust employees) are under a legal obligation to facilitate women’s right to make choices about birth (Human Rights Act and Article 8, European Convention on Human Rights). In order to discharge their obligations lawfully, they must diligently consider all the mechanisms in their power to enable women’s choices and decisions in childbirth to be respected. I am informing them that they must consider the individual circumstances of the woman and her particular situation rather than invoking a blanket policy, and insisting that when the Trust has made a decision it must give its full reasons for their decision and these reasons must be clearly justified.

Given that some Trusts have swiftly been able to arrange honorary and/or bank contracts with local independent midwives in this situation, it is not clear what justification other Trusts have for refusing to grant a similar arrangement. So, I am asking them to consider their legal obligations carefully, to investigate how other Trusts have been able to accommodate independent midwives and to reconsider the options available.

I have also included some information about the likelihood of some women feeling forced to freebirth, particularly in the absence of any equivalent provision for continuity of carer within the local NHS services. And I have expressed an urgent concern about the avoidable harm that could come to women and babies in this situation, as well as the difficult position that Trust staff could find themselves in should a disengaged and fearful woman need to access emergency care in labour or the broader perinatal period.

In these circumstances, the granting of honorary or bank contracts may represent the only way for vulnerable women to access any maternity care at a critical time in their pregnancies.

Concerns about midwives attending the births of friends and family
There has been recent publicity, linked to the independent midwives’ situation, concerning the legal position for all midwives attending a close friend or family member in the intrapartum or broader perinatal period.I am aware that, until now, it has been perfectly routine and accepted practice for midwives to attend their close friends and family members in labour, both in a supporter role and as a practicing midwife.However, Birthrights is not in a position to give legal advice to those seeking clarity on the current legal position on this matter. We suggest that midwives contact the RCM, the NMC and speak to their NHS Trust to get clarification on the situation in their area and their particular circumstances.

We will continue to do all we can in public and behind the scenes to support women and their midwives at this challenging time.

Rebecca Schiller

Childbirth and the Court of Protection seminar

On 8th March, Birthrights, alongside Queen Mary’s School of Law and 39 Essex Chambers, will be putting on a seminar taking a critical look at the recent trend of forced caesarean decisions in the Court of Protection.

The seminar (17.00 – 19.00) will feature an impressive line up of panelists including: Professor Lesley Page CBE, President of The Royal College of Midwives, Dr Daghni Rajasingam, Consultant Obstetrician, Guys and St Thomas’s NHS Foundation Trust, Dr Jo Black, Consultant Psychiatrist and Clinical Director for Perinatal Mental Health at NHS England, Polly Sands, specialist perinatal mental health midwife at Guys and St Thomas’s NHS Trust, Seaneen Molloy-Vaughan, writer, mental health blogger, and mum of one, in addition to Elizabeth Prochaska, Matrix Chambers and Birthrights and Victoria Butler-Cole, 39 Essex Chambers.

The event is primarily aimed at lawyers, and judges working in the Court of Protection but healthcare professionals and anyone else with an interest are more than welcome.

To reserve a place please contact: Beth Williams (beth.williams@39essex.com) / 020 7832 1155

More information about the event can be found here.

Birthrights Criticises NMC for Independent Midwives Decision

Birthrights strongly criticised today a decision by the Nursing and Midwifery Council (NMC) that prevents many independent midwives from caring for women in labour. The decision (which relates to the level of indemnity insurance arranged for many independent midwives by their umbrella body, IMUK) has resulted in the regulator instructing pregnant women to make immediate alternative arrangements for their birth care.
In an urgent letter to NMC chief executive Jackie Smith, Birthrights CEO Rebecca Schiller said that the NMC’s actions, “appear designed to cause maximum disruption and damage to independent midwives and the women they care for,” adding that, “we do not believe that these are the actions of a responsible regulator.”
Schiller adds that “the NMC has a key role to play in protecting public safety, yet this decision directly jeopardises the health and safety of the women it is supposed to safeguard. Beyond the very real physical health implications of this decision, it is causing emotional trauma to women and their families at an intensely vulnerable time. To date, it appears that the NMC has shown no concern for the physical and mental wellbeing of pregnant women who have booked with independent midwives.”
In the letter, Birthrights highlights the unnecessarily tight timescale imposed by the NMC and lack of attempt to communicate what constitutes adequate levels of insurance. Schiller expresses her concern that some women will now feel forced to give birth alone adding, “many women choose the care of an independent midwife because they are unwilling to access NHS services, often because of previous traumatic experiences. Without the support of their chosen independent midwife, women have already told us that they feel their only option will be to birth without any medical or midwifery assistance. We hope that you will share our urgent concern about the avoidable harm that could come to women and babies in this situation.”
Birthrights is urging the NMC to remedy the damage caused to date by taking urgent steps that include:
  1.  Guaranteeing that all women who are currently booked with independent midwives using the IMUK insurance scheme will be able to continue to access their services
  2.  Reassuring Birthrights, IMUK and the women who have already engaged the services of independent midwives that the midwives caring for them them will not face disciplinary action for fulfilling their midwifery role
  3. Urgently making a public recommendation on what constitutes adequate insurance.

A view from India: Human Rights in Childbirth

Today is Human Rights Day 2016. Every year on the 10 December we commemorate the day on which, in 1948, the United Nations General Assembly adopted the Universal Declaration of Human Rights. So on this day, when we think about how we can stand up for human rights both here in the UK, and all over the world, we are sharing a guest blog post from Lina Duncan, a midwife (@MumbaiMidwife), who has written about her experience of childbirth in India…

Trigger warning – this piece discusses a stillbirth

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I have lived and worked in urban India for nine years and during that time I have found that midwives are missing from the system. I have witnessed how hospital policies, mixed with religious or family tradition, harm women and their babies.

I have heard and read hundreds of stories about women in India who have been pressured into potentially unnecessary interventions with inaccurate, fear-mongering information. This breaks women. It damages them before they even begin to birth and care for their babies. Most women do not speak of these things because they are told that a healthy mother and baby is all that matters.

I have seen and heard of many tragic situations of pregnancy loss or stillbirth where the mother was not told the truth. In each case, the mother was told her baby was in the NICU. She was lied to and denied the right to meet her baby, to make memories, to grieve, to hold her baby. Mothers are too often then silenced in their grief.

I do not believe that a healthy mother and a healthy baby are all that matters. I believe that the truth also matters. Facts, and language, are vital, so that women have all the information they need to make informed decisions. This is especially the case when a care provider has to give difficult, or potentially devastating news.

Truth + Kindness + Compassion = (usually) Satisfaction and Comfort

Half-truths + Lies + Fear = Broken Trust, Fear and Trauma

++++++

I have a friend. She looks a little wild, maybe that’s why I liked her from the start. She often has a vacant look in her eyes. Frequently, she adjusts her clothes and shows me bruises from her alcoholic husband.

She doesn’t know her birthday, nor her age. She looked about 22 when I first knew her, pregnant with her first son who was born in a temporary shelter where she was living on a disused railway platform.

Fast forward a couple of years. I have not seen her for months. Her chaotic life is mostly about daily survival. She feeds her drunk husband first, of course. Then, her son, and then, her pregnant self. She has not had any antenatal check-ups. I persuade her to go with me to the government hospital, with son in tow because she is afraid to leave him with his father.

I show her what to do and entertain her lovely unruly son who is filthy. Everyone stares at me, and her, and it’s awkward and tedious. It takes about seven hours to get completely registered. She is prescribed vitamins, calcium, protein powder. I get her a few of the important ones and open them so they can’t be sold for liquor.

I don’t see her again for months and I worry.

One day she rocks up and calls my name. She is 39 weeks pregnant. She has had no antenatal care for 30 weeks. She does not want to go back to hospital but her husband thinks it’s a good idea. I go with her. The son stays at ‘home’.

The hospital wants to see a sonogram. The machine is broken. We have to pay 400 rupees (£4) for a private one. She has 10 rupees only. I pay. It takes forever.

I’m ‘not allowed’ in with her. Then the curtains are drawn back and I’m invited in. I know it’s not good news. ‘No heartbeat and only part of the brain,’ says the sonographer, to me. My heart sinks. I ask him to tell my friend as my Hindi is not good enough. He tells her and she smiles and says, ‘let’s go get lunch’. She has not understood.

We get food and find her husband, who is drunk, and her 3-year-old son, who has bloody knees and chin from playing alone in a building site. She is angry. I call my consultant doctor friend who works in a government teaching hospital. He invites us to go there immediately.

Another sonogram. Heavily pregnant woman with confirmed anencephalic baby. Drunk husband. Three-year-old doing somersaults all around the hospital wearing his father’s t-shirt and nothing else. We are a laughing stock and I am requested to stay and admit my friend for induction and then remove the husband and son.

She is disturbed that her son is alone with dad and they are not ‘allowing’ her out of hospital. The hospital requests that she fasts and start induction at 5am the following morning. I ask several times, politely, if I may accompany her but it is not allowed. Baby is breech and still alive. I have had lots of conversations with her about what to expect. It hasn’t sunk in. She either doesn’t understand or doesn’t want to.

That night, I tell her I will come and I will be outside the ward until she gives birth and they let me see her. I tell my friend that when she feels alone, she can know I am just on the other side of the wall. This breaks my heart. I am a midwife.

She has to go into the labour ward alone.

A colleague and I sit on the floor outside the labour room for 19 hours. Being a doula through a wall is very hard, especially knowing what she is about to face. No one should have to labour and birth without a companion.

Around 1am we are called into a little room to look at her little girl who has been born dead. I ask to take a picture for my friend. They assure me that she will be shown her baby but don’t let me in to be with her. I take pictures on my phone. They are lovely doctors but I am so angry.

At 4am they let me in to see her and ask me to buy her tea and food. It had been about 30 hours since she has eaten.

It is easy to find her, sitting up in bed with a big grin, announcing she is starving and asking where her food is. I ask her if she has seen her baby and she says, ‘not yet’. I ask her if she wants to see my photos and she says yes. I tell her that her baby was not born alive, that she was a girl, that her heart had stopped beating before she was born. I tell her the truth. She doesn’t ‘hear’ it. She smiles, asks me to come back in the morning and goes into a deep sleep.

In the early hours of the morning my phone rings. Sobs, deep sobs and demands. ‘Come now’, she says. ‘They have killed my baby,’ she says. My friend is distraught in a room full of mothers with their babies.

The day she is discharged I go to bring her home. She’s a darling and so feisty. She laughs and jokes until we walk arm in arm out of the ward. Then her body begins to shake. She says, ‘I came here to have a baby and I’m leaving with empty arms’. I have tears running down my face as well and passers-by gave us kind looks.

My colleagues and I make many visits over the following days and weeks. The family like to see the picture on my phone.

My friend has since had another baby. Her husband sold her when she was only 2 weeks old. This is one woman, one story and she represents many that live in a silent story of abuse and disrespect.

Many of us are longing for the Human Rights in Childbirth conference to be held in Mumbai, February 2017. We hope to hear many women’s stories, hear from researchers, and talk about how a midwifery model of care can be introduced in India. Do follow the conference, and join in the conversation. #breakthesilence

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A day in the life of a human rights centred midwife

Today started as many of my days do with me going straight into a meeting, no time to grab a drink or check my emails. The meeting was discussing how we improve services for women accessing early pregnancy and gynaecology. By redesigning our estate we can improve the journey for these women. How does that relate to their human rights? Well, ensuring women are cared for in an area that’s private and appropriately staffed with skilled nurses and medical staff means women that are suffering a miscarriage or early complications in pregnancy are appropriately cared for and supported. Midwives working in a hospital setting often don’t have any dealings with women below 20 weeks so its important that I make sure that the way in which these women are cared for compliments the midwifery care they receive and promotes the ethos of women centred care. If the care we give is based on the needs and wishes of individual women then we are will be meeting their human rights.

Walking round the maternity unit I meet one of our new consultant midwives who talks to me about a women she has been caring for. This woman is very keen to have a vaginal birth but is being discouraged by some of the medical staff who have concerns about her risks. Midwives and obstetricians have an obligation to talk to woman about any risk factors they may have. Unfortunately every doctor this woman has met has felt the need to reiterate this woman’s risks factors. As she clearly states “ I know the risks, I’ve been told them, I’ve researched them, I just want the best chance to have a good birth experience”. The skill to being a woman centred midwife or doctor is to speak to women on an equal footing. To remove the power dynamic that is so often present in the relationship between health professionals and those they care for is one of the fundamental steps in building a trusting relationship. Trust is, I feel, one of the building blocks of a human rights based relationship with those we care for.

I meet a young woman who has recently given birth to her 1st child but is still here 6 days later. The baby has been under the care of the neonatologists. This intelligent woman has become a mother and has experienced first hand how the “just in case” approach and “doctor knows best” has led her to stay in hospital all this time. She’s a health professional and the work part of her has made her question the doctors, she doesn’t feel the treatment and the investigations her baby has had were necessary, but now she’s a mum and the very rational, logical, evidence based approach she uses every day at work has becoming clouded by the emotions that come with being a mother combined with all the changes taking place in her body following birth. We talk through how she feels, she comments on how the care she received was great until the baby was born and then it all “got out of control”. She has been told she can go home today so we agree that she will write to me, detailing her experiences as a mum and as a health professional. I can then use that to help me challenge some of the policies, procedures and behaviours that exist in the organisation that don’t support a culture of respecting the human rights of mothers and baby’s.

My afternoon is spent trying to support the managers in staffing the unit safely, rewriting a job advert for midwives focussing on attracting candidates that believe in women centred care and the role the midwife plays in facilitating choice and helping women and their families to have a positive birth experience. I then respond to a complaint from a woman who feels she wasn’t listened to when she was in pain, didn’t have her wishes respected or her beliefs.

All of the above makes my day sound pretty depressing but actually its full of positive stuff. I see midwives and doctors supporting women, being kind, communicating well and appropriately. I see staff members supporting each other with guidance and tips on how to manage particular situations and I see many, many happy faces of women, their partners and their families who have recently met the latest arrival to their family.

I haven’t laid a hand on a pregnant woman’s abdomen, or caught a baby as its mother pushes it out or helped a new dad figure out how to put a nappy on his new child. That doesn’t make me any less of midwife nor does it mean I’ve not been able to act in a way that promotes the human rights of childbearing women.

What makes a “human rights centred midwife’?

Kindness, compassion, consideration, respect, honesty and a fundamental belief in a woman’s right to choice.

You know what’s interesting? You could take out “human rights centred” because these are all the qualities that make a great midwife and having spent 22 years working in maternity services the overwhelming majority of midwives I have met have all those qualities. Unfortunately sometimes the services they work in, the culture of the organisation in which they are employed doesn’t support them in demonstrating all these qualities. Fear of litigation, of not following guidelines or off being labelled a “maverick” midwife by supporting choices women make that might not be the norm make some midwives act towards women in a way that they don’t fell comfortable with. This makes some midwives move on, some leave the profession all together and some give in, become part of the culture.

My words of wisdom…..

Be brave, be strong…….be a midwife…..

Simon Mehigan is Deputy Director of Midwifery at Chelsea and Westminster Hospitals NHS Foundation Trust, and a Trustee of Birthrights. This blog post was first published as part of the Growing Families Conference blog series.

Dubska ECHR judgment: disappointing but not the last word

The Grand Chamber of the European Court gave judgment today in Dubska v Czech Republic. We wrote about the earlier decision of Court here. The Court reaffirmed that women’s rights in childbirth are protected by Article 8 of the European Convention on Human Rights, further underlining the human rights protections that childbearing women should enjoy.

But in a disappointing and poorly reasoned judgment, the Court found that the Czech government was not obliged to regulate midwives to enable them to attend women at home births, despite the significant negative impact this may have on the safety and wellbeing of childbearing women. The Court accepted that care in Czech maternity hospitals was ‘questionable’ and expected the Czech government to keep its law and practice under “constant review so as to ensure that they reflect medical and scientific developments whilst fully respecting women’s rights in the field of reproductive health”.

Five of the judges dissented, expressing a joint opinion that disagrees with the Grand Chamber’s judgment. These judges found that the Czech system effectively forces women to give birth in hospital and could not be justified by any public health argument. They noted the observations of the CEDAW Committee on disrespectful and abusive practices in Czech hospitals. As they said, citing the UK Supreme Court’s decision in the Montgomery case,  ‘Patronising attitudes among health personnel should not be taken lightly, as they may constitute a violation of an individual’s right to self-determination under the Convention.’

This judgment is a missed opportunity to offer appropriate, safe and rights-respecting choices to Czech women. Women giving birth in obstetric units in the Czech Republic face a range of unsafe and rights-violating practices, meaning that for some choosing to birth at home is the only way of avoiding degrading, painful, lonely and de-humanised care. Routine practices in these units include: separation from their babies, a lack of access to facilities that support physiological birth, no involvement in decisions about their care, routine episiotomy, lack of pain-relief options, giving birth without a partner unless they pay an additional fee. Without regulated and state-supported access to out-of-hospital birth it is likely that some women will now feel forced to give birth without medical assistance. When hospital births that undermine a woman’s basic human dignity are the only option, there are significant safety issues at stake.

For women in England the judgment has no impact on their right to choose where to give birth. Choice of place of birth is enshrined in policy and practice, and underpinned by the recent report of the National Maternity Review. But for women in eastern Europe this will create a significant bend in the road that activists, mothers and health care professionals will need to navigate with clarity and purpose to minimise the damage.

Thankfully the clamour for childbirth rights, and a shared understanding of how to promote them, is growing across Europe. More cases on abuse during childbirth will undoubtedly reach the Court and other recent ECHR judgements (such as Konovalova v Russia) still stand; robustly upholding women’s rights to make decisions about childbirth.

Given the forceful dissent, and the Court’s demand that the government keep pace with change, this is unlikely to be the last word on homebirth in the Czech Republic.

Talking about human rights in maternity care helps the wider human rights debate

“What have human rights got to do with pregnancy?”

“I wouldn’t have thought you have any rights – isn’t it about what’s best for the baby?”

“That’s not an issue in this country, surely?”

Before embarking on a project for Birthrights earlier this year, i decided to conduct my own straw poll of women – of mothers – I knew. I explained what Birthrights did and asked them what they thought. I was expecting questions, positive interest and challenges but it was these three responses that really got me thinking. Why is it so hard to connect human rights with something as ordinary and commonplace as pregnancy and childbirth?

I’ve been working for human rights and equality organisations for almost 15 years, including directing campaigns at the leading UK pressure group, Liberty, so I’ve seen and heard first-hand some of the biggest myths and misconceptions that exist around these issues. Part of the problem is that there isn’t – there has never been – enough public education from the Government about what human rights are and how they protect us. Human and rights might sound pretty self explanatory but once you get into the dry, legalistic territory of the European Convention and the Human Rights Act 1998 and you definitely don’t “have me at hello.”

When translated into straightforward language, the Human Rights Act is difficult not to love. Why wouldn’t you want a right to life, to speak freely, to practise your religion, to personal privacy and family life? What’s so bad about treating every human being equally, with fairness, dignity and respect? Why wouldn’t you want protection against discrimination, torture and inhumane treatment and arbitrary detention? But when you start to talk about ‘articles’, qualified and limited rights and about lawyers and courts you lose people’s interest. Most people are lucky enough to go through life without ever having to defend their rights in court and without having to hold the state to account, so why would they relate? And even when a hugely important human rights case, like that of the Hillsborough families, becomes front page news, it can be difficult for campaigners to communicate the link between justice and human rights. Add to this the regular attacks on human rights lawyers by some politicians and sections of the press and you have a toxic mix.

One of the biggest misconceptions is that human rights are only about lawyers and courts – that human rights make ‘fat cat’ lawyers richer and society poorer. But nothing could be further from the truth. The Human Rights Act means that you can defend your rights in UK courts and has brought justice and answers for many but it also means that public organisations, including the Government, the police and local councils, must treat everyone equally, with fairness, dignity and respect.  The Human Rights Act has helped thousands of people protect their rights without going to court.  It means that local authorities have had to review policies to make sure they treat the vulnerable respect and users of a wide range of public services have used the Act as a tool to argue for better and fairer services.

This is why what Birthrights does is such an important part of the puzzle. Their work is about defending the human rights of all childbearing women, with a particular focus on vulnerable groups such as asylum seeking and refugee women, disabled women, women in prison and women with other, complex, social needs, who are most in need. Their work raises the importance of providing respectful, personalised care for all women and the benefits of this for safer and better births. And their work highlights that respect for human rights is fundamental to all healthcare and the legal imperative to respect the autonomy and dignity of women, whether in relation to maternity care or to abortion rights.

Human rights protect us all but it is people who are most vulnerable who are in most need of protection against abuse. This inevitably leads to negative and misleading narratives about human rights and the way that the law is applied and this can be difficult to challenge in a way that is meaningful and persuasive for people who are otherwise, unconvinced. Campaigners must engage people in thinking about and looking at rights in a different way, through the lens of situations which are relatable. If this helps begin a conversation, we have more hope of increasing understanding and respect. If safety, equality, autonomy and dignity matters to one woman during pregnancy and birth, then why wouldn’t it matter to all women? If we can’t start life with these principles in mind, then where do we go from here?

Sabina Frediani is a campaigner and freelance writer. She spent over a decade working for the human rights and civil liberties pressure group, Liberty, where she directed award winning public and political campaigns, and has recently been helping Birthrights with our organisational strategy.

Birthrights training eligible for Maternity Safety Training Funding

Last August, Birthrights, the President of the RCM, and others wrote to the National Maternity Review team stating our belief that “safe maternity care is contingent on respectful care” and asking Baroness Cumberlege to put human rights at the centre of the Review process.

On the 17th October, the Department of Health launched a Maternity Safety Action Plan. We believe as strongly as ever, that the roll out of a human rights framework in maternity care needs to be the touchstone of that Plan. The good news is that Birthrights training is eligible for funding from the £8m Maternity Safety Training Fund that will make £40-£80k available to each Trust to enable them to implement the Maternity Safety Action Plan. So if you are interested in Birthrights training, this is a great opportunity. You can find full details of our one-day “Creating a Safe Maternity Culture” course here. Do get in touch with us as soon as possible at info@birthrights.org.uk to check availability.

More information on the Fund itself can be found here. The deadline for applications is the 18th November.

Maternity Care Failing Some Disabled Women

Research published today (15/09/16) by Bournemouth University and commissioned by Birthrights highlights how maternity care may not be meeting the needs of some pregnant disabled women.

A survey of women with physical or sensory impairment or long term health conditions highlighted how  – despite most women rating the support they received from maternity health carers positively – only 19% of women thought that reasonable adjustments or accommodations had been made for them. Some found birth rooms, postnatal wards and their maternity notes and scans “completely inaccessible”,  while a quarter of women reported that they felt they were treated less favourably because of their disability. Most strikingly, more than half (56%) felt that health care providers did not have appropriate attitudes to disability.

Just over half of the participants expressed dissatisfaction with one or more care providers, particularly their awareness of the impact of disability and their perception that their choices in pregnancy and birth were being reduced or overruled. One participant with a physical impairment and a long-term health condition stated, “No one understood my disability. No one knew how to help or who to send me to for support.” Another added, “I didn’t have any control or any choice. Everything was decided for me.” And one woman said, “They did not listen to me. I advised them on the unique way my body works. They did not listen to my advocates.”

Speaking in advance of the publication of her book Why Human Rights in Childbirth Matter and the Birthrights #newchapter campaign linked to the launch, Rebecca Schiller, chief executive of Birthrights said, “this interim report suggests that there are significant human rights issues at stake for disabled pregnant women in the UK and Ireland. More than a quarter of women we surveyed felt that their rights were either poorly or very poorly respected. This is unacceptable and we will be working hard to address this over the coming years.

After Birthrights’ dignity in childbirth survey (2013) we became concerned that the needs of disabled women in the system were not being met. Though it’s heartening to see how overall most women were satisfied with their care and hear some positive stories of excellent practice there is clearly progress to be made. The women surveyed asked overwhelmingly to be listened to. It is crucial to listen to and trust women to ensure the system is genuinely meeting their requirements and that they are at the heart of decisions about their maternity care. The Equality Act 2010 places a duty on the public sector to provide services that meet the diverse needs of those who use them yet participants indicated worrying lack of attention to accessibility of maternity services and facilities for women with a range of disabilities.

The survey is indicative of a wider problem around women’s rights in childbirth that can impact on all women and often most forcefully on the most vulnerable . This month Birthrights is launching a campaign for a #newchapter in pregnancy and childbirth to ensure safe, quality, respectful care is available to all women. Pregnancy and childbirth are a vulnerable time and the physical and emotional impact on women and their babies of a negative journey through pregnancy and childbirth can be severe.”

Professor Vanora Hundley of Bournemouth University added, “while this is a small survey the findings echo the recommendations of the National Maternity Review published earlier this year, which highlighted the importance of personalised, woman-centred care with continuity of carer. It is clear that these are important considerations for all women, but particularly for those women who have a disability.”

Read the full interim report here. We expected the full report to be released in January 2017 when the qualitative research is completed.